Beating the odds

It’s hard to explain to someone what it feels like to be told you have cancer. Imagine what it must feel like to hear it.

Some patients realize that the hunch they had, sadly, was right. Others react with disbelief, sometimes panic.

You’re Not Alone Cancer support group for patients, family members and friends meets from 7 to 9 p.m. Thursdays at First Presbyterian Church, 2936 Rockefeller Ave., Everett. Call 425-258-7255 for more information. The American Cancer Society has many resources available to those with cancer. Call the Everett location at 425-741-8949 or go to www.cancer.org for more information.

Many cancer patients don’t know where to go for information and support concerning a disease that is often deadly.

Away from doctors’ offices, there’s a place where those with cancer, and their families and friends, can gather once a week to talk and listen, and learn about the disease and how to live with it.

The You’re Not Alone cancer support group, sponsored by Providence General Foundation, meets from 7 to 9 p.m. Thursdays at First Presbyterian Church, 2936 Rockefeller Ave., Everett.

Buz Tyler, 54, is the third facilitator of the group that began in 1982. He’s been with the group for nine years.

Some people, a lot of them men, don’t think they need a support group, Tyler said.

“It’s more than just that,” he added. “The experts are the group members themselves.”

There are books to check out, research articles to pass around and patient-to-patient information to share.

Once in a while there’s a story that helps others see, even during the toughest times, that hope is still alive.

Everett resident Bob Hughes has been attending the support group meetings for more than 20 years. His story is one of those that offer that hope.

During the summer of 1980 Hughes was on a quest to exercise and eat a more healthy diet. He was losing weight.

Hughes was then 29 with a toddler son. Toward the end of the year when he was working outside in the Oregon drizzle, he caught a cold. Or so he thought.

He noticed that his energy was in short supply. It was harder for him to walk, even from the house to the garage.

Hughes and his family came to Snohomish County that Christmas to spend the holidays with family. He was miserable the whole time and slept a lot. He noticed that his tongue wouldn’t stop bleeding after he bit it. He would soon find out that was one of the effects of low platelet counts in his blood.

After they returned to Oregon, Hughes knew he had to see a doctor.

“The doctor looked visibly shaken when he came in to see me,” Hughes said.

The tests began, specialists were sought and a bone marrow sample was taken.

“They came in a little before 7 p.m. and told me they had found leukemia cells in my blood,” Hughes said. “And it was pretty advanced.”

Doctors told Hughes he had acute lymphoblastic leukemia, or ALL. They asked Hughes if he had all his affairs in order. It was nearing the end of December, and they didn’t expect him to see January.

“I was very scared,” Hughes said. “My son had just turned 3, and the doctor told me I was going to die. My family would be alone.”

Hughes asked himself, “Why now?” instead of “Why me?” He wanted to see his son grow up.

His family, along with the doctors, decided he should go immediately to the University of Washington.

He arrived Jan. 1, 1981, and spent what he thought would be his last day with his family. “I didn’t think I was going to survive,” Hughes said.

He checked into University Hospital on Jan. 2. Three days later he had a Hickman catheter placed into his chest so that drugs could be administered into the right atrium of his heart. He would wear the catheter for almost five years.

Hughes received heavy doses of chemotherapy throughout the next few days. He made it through January and left the hospital on Feb. 4, one day after being told he was in remission.

Doctors thought Hughes’ best option was a bone marrow transplant, but none of his family members was a match. The doctors stored Hughes’ own bone marrow.

He then began a grueling radiation regime with the added pain of having chemotherapy drugs injected into his spine.

When doctors told Hughes he was in remission, he felt like he had another chance, but they still didn’t think his outlook was very good at all. He said the doctors tried to keep him focused on reality, but he just wanted to hear the good stuff.

“You’re too afraid,” Hughes said. “You’re dealing with the word cancer and the fear of the unknown.”

In September 1981 he left the hospital for the last time, still in remission. To this date he has not relapsed.

Hughes says that even though his journey with cancer happened a long time ago, the scar from his catheter is still there to remind him of those dark days.

He began attending the You’re Not Alone group in 1982 and he still goes on occasion. The Everett support group is where he found people who were going through the same feelings, treatments and ordeals he was.

As well as telling his story, Hughes says he goes to the meetings to listen. He remembers what it was like when he felt alone with cancer and was not expected to see many more days.

“This group means a lot,” Hughes said. “It really doesn’t seem to matter what kind of cancer you’re dealing with. It’s the same word.”

If people don’t get the information they want from their doctors, the expertise of the support group members can help.

Group facilitator Buz Tyler said, “I hear people say, ‘The doctor says you have cancer. Everything he was telling me I didn’t hear.’

“I do a lot of crying with these people,” Tyler said.

People tend to think that a cancer diagnosis is a death sentence, Tyler said, and he should know. His mother died of colon cancer and his sister of lung cancer. Tyler’s father had colon cancer and is a survivor.

“There’s a lot of research that shows support groups are helpful,” Tyler said. They talk about diet changes, vitamins, treatments and tips on what new foods to try.

Patients have to be advocates for themselves and direct their health care, and family members need to learn how to support a loved one dealing with cancer, Tyler said.

“I hear some miracles, real stories here.” Tyler said. “There is hope for people who think there is no hope.”

You can e-mail Christina Harper at harper@heraldnet.com.